Multidisciplinary Expert Meetings
National Multidisciplinary Expert Meetings – “X-linked Adrenoleukodystrophy”
Organizers: Adult Leukodystrophy Reference Center (CRMR), Paris (Prof. Fanny Mochel)
Purpose: Discussion of adult patients with adrenoleukodystrophy to support the diagnosis of cerebral forms of the disease and therapeutic options.
Format: Videoconference
Frequency: Monthly, usually the 3rd Friday of the month, 1:00–3:00 pm
Contact: crmr.leucodystrophies.psl@aphp.fr
Regional Multidisciplinary Expert Meetings – “Neurometabolic Imaging”
Organizers: Adult Neurometabolic Reference Center, Paris (Prof. Fanny Mochel)
Purpose: Discussion of adult patients whose imaging may suggest an inherited metabolic disease.
Format: Videoconference
Frequency: Monthly, usually the 1st Friday of the month, 1:00–2:00 pm
Contact: crmr.neurometabolique-adulte.psl@aphp.fr
Activities of the G2M Health Network
G2M Diagnostic Tools
Their main aim is to help non-specialist physicians consider a diagnosis of inherited metabolic disease.
National Diagnostic and Care Protocols (PNDS)
PNDS are rare disease best-practice guidelines. They describe the optimal diagnostic and therapeutic management and care pathway for patients with a given rare disease.
G2M Emergency Protocols
Emergency protocols from the G2M network are available on their website at the following link:
G2M Pregnancy Protocols
These guidelines support the management of pregnant women, or women planning pregnancy, affected by an inherited metabolic disorder.
G2M Treatment Database
Listed alphabetically, each active substance is described with the associated conditions (off-label clinical situations).